Comments on: Boris and Nicole Open Up About Sophie's Spina Bifida

By: Fernando

Fernando — Wed, 11 Apr 2012 17:25:39 +0000

I was born 46 years ago with Spina Bifida. i use a wheelchair,have had too deal with the same issues,i can relate.God Bless You.

By: Rebecca

Rebecca — Thu, 06 Oct 2011 04:39:16 +0000

I love to read stories about people overcoming issues with spina bifida. I was born with it myself in 1988 and it’s amazing to see the improvements that have been made since then. I love that the family is trying to get awarness out there and to raise money for this cause. It helps me get through my day to know that I’m not the only one out there going through this.

By: Kitty Freat

Kitty Freat — Mon, 12 Sep 2011 13:50:02 +0000

i was told @ 29wks my baby have spina bifida and water on the brain i cryed my eyes out when the dr.explained what it was i have 3 kids before whom was born in perfect health an now to know my forth baby maybe in bad shape at birth am really scared ive been told am a strong but when it comes to my kids am not that strong my husband dont want to talk about it he keeps saying our baby is fine we also found out we are having a girl and shes just what we wanted…..am really scared and have no idea how i am going to handle the situation am 30 weeks today

By: Avie

Avie — Sun, 31 Oct 2010 23:35:43 +0000

Boris and Nicole,

You have a wonderful story and I was moved by your account of your daughter’s diagnosis. I admire your relentlessness and unconditional love. The kind that mothers and fathers have, the kind that motivates children to dream and achieve against all odds. Your family are in my thoughts and prayers. God’s eyes are on the sparrow- your daughter and he will always keep her in his care and other children too.

Hang on in there!

By: Natalie

Natalie — Thu, 21 Oct 2010 01:54:37 +0000

hi im Natalie. i just read all about this. i was born with spina bifida. i am 26 years old. i have done sports all my life. i did horse racing 3 to 11 years old. i did track and field 5 to 14 years old. i did tennis. and i did basketball for 10 years starting when i was 11 years old. i valenteer at scottish rite hosptial. i think of there as my second home they are so loving and nice there. i live in DeSoto Texas. every year i always looked forward to going to the spina bifida camp it felt like a new world a great world for me. it was fun loving and everybody was really kinda like u too. it made me soo happy and well full heart alive to be around people that go through the same thing. i would not change a thing of my life i love what i have.

By: tim mcilvoy

tim mcilvoy — Thu, 21 Oct 2010 00:26:51 +0000

Having a son born with spina bifida it is very hard. His name is Charlie and now is 15 years old and has had 22 surgerys from shunts to metal rods in his back. He has never walked on God’s earth but will walk with him in Heaven way down the road. He has the worse case you can have as far as spina bifida goes. His out look on life is great has never complain about all the surgerys. We do cath him 5 to 6 times a day and this does work. The first years are the worse then it does get better. I believe in what you all have said GOD only put on your shoulders only what you can handle. My wife and I will always wonder what happen but there is nothing we could have done. Take your folic acid even if you are just thinking about having children. God bless all of these children. Tim

By: Lynne

Lynne — Sun, 17 Oct 2010 02:54:08 +0000

I am a 62 year old female and I was born with spina bifida well before the use of folic acid. The surgery to close my spine was done when I was twelve hours old. By the age of three I walked with the aid of crutches and braces and haven’t stopped yet, although I find walking more difficult these days. I too had difficulty developing bowel and bladder control, but through physical therapy and physical activities to strengthen weakened muscles, both processes “learned” to operate properly and I learned to read my body’s subtle signals. A hint to prevent UTIs might be the use of antibiotic after catheterization depending on what Sophie’s doctor recommends. I too struggle with self esteem issues even now. That could be a side effect of being born “different” in a society that doesn’t often embrace differences.

I too was a high achiever all through my educational years. I attended public schools, then college. I married after college and we have two able bodied children who are now married themselves. I earned a Master’s degree in 1995. I have not yet retired from my work at a local university.

Due to their faith, hard work and determination to regard Sophie as a vital, high functioning, very capable member of the family, a successful life is more than possible for every member of this lovely family. The other children will learn to appreciate and accept all persons. I very much appreciate the openness with which this story was shared with the goal to raise awareness and focus on a person’s abilities rather than their disabilities.

By: Lea

Lea — Mon, 26 Jul 2010 21:13:47 +0000

I have a friend that was born with spina bifida and she had surgery…but the thing is that she was papralyzed from it from the waist down…shr gets uti all the time and i feel bad…she just had surgery last year because her shunt broke…and their was more fluid going into her brain…they needed to take it out…she is happy though…that is all that matters…

By: Gigi

Gigi — Wed, 19 May 2010 05:17:34 +0000

I just wanted to add that “folic acid” is actually synthetic. The natural form is folate or l-methylfolate, which is also found in food. This is important to know because they never tell you that 20% to 30% of the population CANNOT process folic acid. Those 20 to 30 percent could take all the folic acid vitamins and it would not do any good. I am one of those people and I have to get folate from food and I can take a supplement called Metafolin. Metafolin does cost more than the cheap synthetic folic acid that they put in vitamins. But it really is affordable. I have found it for $12 for 100-day supply at 800 mcg dose per day.

Please spread the word. Its better to be safe than sorry.

By: Walter Nash

Walter Nash — Mon, 08 Mar 2010 17:47:37 +0000

Enjoyed the story. Nice to know that some challenges can be experienced by everyone. Just wanted to know if there were any alternative treatments in the Dallas, TX area. I have a daughter soon to be 7 w/Spinabifida. Cath every 3-4 hours, etc. Just looking for ways to enhance her quality of life.